Advice needed for newbie PFS, Letrozol destroyed me. now in serious trouble, Pls help

Member Stories
#1

Hi all,
I am a new user (37 years old) here and I would really appreciate your advices.
I don’t know what to do and I don’t know if I have PFS or secondary hypogonadism (and/or +sympthons from fina). It all started about 11/2017 when I noticed a lower sensitivy during sex. That I notice couple of months and also, I was started to have some kind of nausea feeling but not like going to throw up. I don’t know whats the right term for that but feeling not good. That continued little by little. Also, at this time period and 2 years backwards (starting from around 8/2015) I was gone though some serious life crisis situations which were really stressful and difficult to handle on my mind. Then at 2/2018 my penis went numb at one night and I was having these nausea kinds of feelings for a long time. And also I had some strange feelings in my legs, hands and occipital, like the sensing was disturbed. That lasted a few days. And all this time I was using finasteride. I had use it about 10-11 years. On 3/2018 I stopped using finasteride. I have gone to many blood tests and all that was found on these were the low testo and low free testo. Testosterone have been in the range of 11-13 [range:10-38] (about 5-6 measures at time period 2/2018-9/208). Free testosterone have been in the range of 179-191 [range:230-575], that also measured 5-6 times now. S-Estradiole (2.3.2018) have been 0.07 nmol [range: ≤ 0.15 nmol/l] and LH: 3,7 U/l [range 1-9 U/l]. All this time libido has fallen down and sexual cabability is poor. And the penis sensitivity has been variable, mostly poor sensitivity and ED. Now on 9/2018 I have tried Letrozol for about a month. LH rised to 8.6 U/l [range 1-9 U/l] and Estradiole have been about the same 0.08 nmol [range: ≤ 0.15 nmol/l]. Testosterone results im still waiting for a week. So well see where that’s going.
But now I really don’t know is this finasteride sympthons that’s causin these, do I have PFS or is it hypogonadism. And what should I do, was the Letrozol a bad decision? Or should i try TRT? Or forget these medications and go with some protocol? Letrozol have helped a little (average) to the nausea kind of feeling but not for the sexual things. But this situation has continued so long so im also very depressed for that. So there was the basic story of my situation. Sorry about the bad English and thank you in advance! I also wish the best for everyone here.

Former Blood test form 2/2018:
Measure: Result: (Range)
P-Kreatine: 94 umol (l≤ 100 umol)
fP-Glukoce: (fasting) 6.0 mmol (4 - 6 mmol)
B-Hemoglobine-A1c: 35.0 mmol (mol20 - 42 mmol/mol)
P-Alaniiniaminotransfera: 19 U (l≤ 50 U)
S-Tyreotropine: 2.0 mU (l0.4 - 4.5 mU)
S-Tyroksine, free: 15.7 pmol (l11 - 21 pmol)
S-Prolaktine: 214 mU (l≤ 350 mU)
S-HBG: 44 nmol (14 - 71 nmol)
S-Testo,free,calculated: 184 pmol (l230 - 575 pmol)
Glom.filtering CKD-EPI 89 ml/min/1.73m2 (≥ 89 ml/min/1.73m2)
B-Hemoglobine: 150 g (l134 - 167 g)
B-Eryt: 43 % (39 - 50 %)
B-Erytrosytes: 4.72 E12 (l4.3 - 5.7 E12)
E- Eryt,middle: 91 fl (82 - 98 fl)
E-Hemoglob,middlemass: 32 pg (27 - 33 pg)
B-Leukosytes: 5.4 E9 (l3.4 - 8.2 E9)
B-Trombosytes: 177 E9/l (150 - 360 E9)
S-Testosterone: 13.2 nmol (l10 - 38 nmol)
S-Cortisol(2/2018): 523 nmol (130 - 550 nmol/l) -> (4/2018) -> 373 nmol (130 - 550 nmol/l)

#2

Sorry to hear you are going through this.

Have you been to see doctors at all about your problems? I know most are not very helpful, but might we worth getting the opinion of a Urologist.

Its hard to know if hypogonadism is contributing or not. One thing I would say, and I think this is a mistake many people make, is if you are gonna give a trial to boost your testosterone, you probably want to give it a few months of your testosterone being within normal range before you draw any conclusions. I see a lot of people saying their testosterone is now normal after treatment but abandon the treatment because they don’t instantly feel better. I was reading an erectile dysfunction study the other day in hypogonadal meant given TRT and the time frame that they assessed the men was 6 months. Clearly, the testosterone is essential for the repair of the penile tissue and it probably takes this length of time to get things better.

I’m not a doctor so please just take my advice for information purposes. If you plan to replace testosterone I would definitely do it under a doctors supervision. I’m sure other people will reply too so lets see what they say

#3

Thank you for your reply Pianist_Will.
Yes have have been to doctors tens of times since 2/2018 but with minimal help.
Doctors here in Finland dont know anything about this disease.

Letrozol helped a little for the average to the nausea as i mentined but not for the sexual sides,
sexual sides it affected negative. I think testosterone rised too high with that standard 2,5mg per day dose.
I know I must have started the Letro with minimal dose, but I believed the doctor. Never believe the doctor.
And I got some sides also from Letro like sweating at night and poor sleep.
I quit the Letrozol after about month trial and about 3-4 days from quitting I had a really good day. My sexual drive pounced on one morning and I got erections just to thinking about it, actually that happened the whole day. And the sensitivity was a lot better on that day. Felt almoust normal. And then when the testo (I think) lowered again back to the usual level -> sexual sides back to normal (poor).

Here are the measurements when on the Letrozol:
Measure: Result: (Range)
S-Testo,free: 461 pmol/l (230 - 575 pmol/l)
S-LH: 8.6 U/l (1 - 9 U/l)
S-Prolaktine: 227 mU/l (≤ 350 mU/l)
S-Testosterone: 30.8 nmol/l (10 - 38 nmol/l)
S-SHBG: 37 nmol/l (14 - 71 nmol/l)
S-Estradiole: 0.08 nmol/l≤ 0.15 nmol/l

I really dont know what to do guys, should i try the TRT with testogel…
This feels really depressing and no im seeing no hope.
Should I keep going if there might be some better days forward or just give up.
Any help would be preciated, what should I do??

#4

Hi there
So sorry to hear your story seems that you are in the same situation as many of us on here
I have had blood tests done doctor said couldn’t see any major issues.
I have tried testosterone injections well to be honest that’s pretty much how i ended up using finasteride due to the hair loss testosterone was causing.
To be honest from the first week of being on finasteride I was having issues but I was also still injecting testosterone so i probably wasn’t sure at first what was causing what.
After I finished my first testosterone cycle i don’t recall feeling any better if anything i recall getting worse. I continued to cycle testosterone for a few years it didn’t make a blind bit of difference to my sex drive or performance Finasteride had completely destroyed it but it was hard work making sense of what was the cause initially as steroids get a bad rep for killing sexual functions . Eventually i stopped the finasteride temporarily as i needed to find out what the problem was so i stopped both finasteride and testosterone this but nothing changed this is when i knew I was screwed Viagra had been my savior throughout this time and was supposed to be a temporary fix whilst my body accepted the finasteride (that’s what guys tell you in the hair loss forums) which is not the case as we all know too well. I started taking finasteride again hoping to balance out ( again advice from hair loss forums) but nothing changed and viagra was still the only option so I then started the testosterone again and dianabol nothing got any better i was just stuck in a rutt of confusion and denial . I was using the testosterone to mask pain and stiffness in my back and neck which was eventually diagnosed as being caused by ankylosing spondylitis due all the pain I was taking high doses of ibuprofen all the way through my years of finasteride which i have recently found out that this combination of drugs condemned me even further as it increases the chances of finastetide making you impotent. It all been a learning curve and a road to self destruction.
My dose of finastetide was 1mg
My testosterone injections were 500mg weekly
And 40mg disnanol for the first six weeks of every 12 week testosterone cycle
Followed by Post cycle therapy of clomid and tamoxifin.
All been something i have been left to regret every since.
Im now injecting Humira Biweekly and munching 20 ibuprofen everyday to stave off pain to allow me to work.
I have been using viagra for around 14 years now to get and maintain an erection.
Im booked in with the hospital in a few weeks to try to bottom these problems out.
It’s been a rough ride Im still hanging in their for the love of my partner and our children I must survive the torture of not feeling like the man i use to be and survive this constant pain from ankylosing spondylitis.
Your not on your own in this messed up situation mate we are all here together to help each other through these hard times and shine a light for each other when each of us is feeling down.
Chin up keep holding in their

#5

Thanks for your reply.

Im really bad situation now and would need advice. I should have found this page 1 month earlier, then i would have realized that I must not never trye letrozol with that kind of dose the doctor told me (because he was saying i only have secondary hypogonadism). At the “standard” 2,5mg per day for about a month. F…k that! At that point I still didnt know whats bothering me, I still thougt that it can be hypogonadism. Now im pretty much fucked.
Because that letrozol, im so pissed to myself, that maybe cost the price for my life. And I found this forum just few weeks too late.

Now my dick is completely numb and no sense. Can get some random erections but only like 30%. Cant masturbate anymore. Cant ejaculate. Libido 0. I got these sleeping problems, digestion is also ruined. Feel really ill most of the day. Is there anything to do to anymore or was my life here? Really thinking about suicide is the only option now…

Before this f…ing letro episode I could somehow manage in my life allthough i didnt know whats bothering me.

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#6

Hey Finfina
Let’s not be talking suicide mate
Things may feel bad at the moment but we can’t giving up on life over all this you have yourself your family and your friends to think about mate
You have to stay positive I know its not easy alot of us have been in situation for years Im talking from experience here mate your not alone in all of this myself and the rest of the guys on this board are here for you and for each other.
I myself and most other guys here have had to deal with these persistent side effects we have learnt to adapt to the persistent sexual issues this problem was a real mind bender but Viagra helps alot of guys in this situation have you tried it yet ? Some of the other side effects like short term memory loss are are things you kind of get use to in a way I can never remember peoples names and I’m useless when people talk to me sometimes i think what did he / she only five mins later .
At this stage your in the early days of it all when you look at the bigger picture things could get better long term.
Hang in there keep fighting it
Feel free to PM me anytime for a chat

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#7

I dont know is there any reason to try viagra cos i have no libido and no sense in the penis?
Allthoug that 3-4 days after quitting letro there was this one better day. That day i think was the last day i will ever ejaculate again.

This just seems to be too much for me to handle. I was in a right road to recovery even if i didnt know that i was doing the right things natural ways.
But this letrozol wrecked all. No sense in penis and total impotence. This is just a pure nightmare 24/7. I cant stop blaiming myself for taking also that drug and i was few weeks late from discovering this forum. Can people get better from these letrozol effects? If theres no hope anymore whats the reason to struggle.

Now i dont have anything to loose anymore. So should i try amino acids? Trt? Something else?

#8

Can you please help me out guys…
Letrozol made my penis sense really low. The tip of the penis and glans. Is there anything that I can do to it or is this the final situation? Is there any hope on that?
Its just horrible.

Also progesterone was measured: 3.7nmol (range < 3.0nmol) so it was over the upper range.

#9

I’ve read a lot of accounts of sexual side effects getting better over a period of time. It sounds like this is still relatively recent for you so please do not lose hope. Anything which interferes with your endocrine system can cause damage but over time, the body can improve itself to some extent. Keep your head up and know that we’re here to listen in this forum too.

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#10

It does sound like an endocrine type issue and something which will probably get better over time. Try not to panic and just try to life a healthy life for the next few months and you should slowly see improvements. I think there is a tendency to over react once this kind of stuff happens and throw everything at it - doctors visits, medicines on line etc. It couldn’t make it worse. It seems senible to give your body some time to adjust naturally and if that hasn’t worked in a few months then try other things like doctor and meds. Keep in mind - many people noticed improvements naturally after you stop the offending drug. Stay calm and keep going

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#11

Thanks for your replies.

What the hell that Letrozol did to my penis because the tip of if and the glans is like no sense? (And the penis sensitivy is now lower overall and of course libido is dead.)
Is there anything that i can do? Like go with the cdnuts protocol with Androhard etc?
Is this because of the AR upregulation in the penile tissue?
Or something with the estogen?

Fuck that Letrozol, I just cant get over that i found this forum few weeks too late. That cost the price of my life. I didnt have any major issues before Letrozol. Before I had like the nausea feeling all day, ED and numbness. But i could sleep and gut + appetite was quite ok. Now i cant have sex anymore, cant masturbate, cant ejaculate and doesnt have any kind of interest to anything.
I dont have life anymore and this is kind of living is no worth living.
Have anyone recovered from these kind of sympthons caused by Letrozol or Aromatase Inhibitors overall?

I really dont want to die but this kind of life is has no meaning. Every hour to every hour is another survival battle.

Dht was also measured: 1.1 (Range 1.0-10)

#12

The reason your penis is numb is likely the ultra-low DHT and high progesterone. Progesterone is known to numb the penis and low DHT will definitely not help.

Google search for “natural supremacy increase DHT” (not sure if I am allowed to post links here)

The only thing that helped me with penis sensitivity so far is boosting testosterone (with red light on testicles) and CREATINE.

Creatine has been shown to increase DHT and helped me a lot with the penis sensitivity but it gave me some other side effects (from some of my other health issues) so I had to quit it…

I’m not sure what you can do about the high progesterone.

By the way I also used one letrozole pill (not even the whole pill just a quarter) to try and combat the PFS sides and I had brutal side effects from letrozole for 2 weeks (non stop cough, bone and joint pains) during that time could almost not get erection, but I did not have an permanent side effects from Letro (or any worse than just due to the PFS before)

#13

Did visit a functional medicine advisor for the gut and overall.
I have been going now with this kind of protocol:
-Eating healty with lower carbs on lunch and some carb backloading on dinner. Thinking of keto diet but what would be the best option at this kind of condition? (When low testo and free testo and low DHT plus high progestone)
-Avoiding for example red meat, sugar, coffee
-Trying to avoid foods that decrease 5AR but this is hard, feeling almost every food is doing that, so what the hell should eat?
-Intermittent fasting 2 days per week for 16h in a day skipping breakfast
-Gym 3-4 times per week
-Trying to be active during the day and take walks and or small sprints while walking

Supplements i use:
-Zinc 25mg + copper before night
-Magnesium sitrate + B6 375mg before night
-Glysine 3g before night
-Boullardii probiots 2 capsules morning
-Digest Gold Enzymes 1 capsule before main meal
-Metagenics UltraClear Sustain for supporting digestion
-Creatine 5g per day
-Omega3 fish oil 1-2 capsule per day but this decreases 5AR so should i drop this?
-D-vitamin 100ug per day
-Iodine 150ug per day
-B12 spray per day
-Some days L-Carnitine capsules

Thinking of adding aminos L-Valine, L-Tryptophan, L-Tyrosine.
Any thougts about these for my situation?

Also going to hospital for 2 weeks period to get some help for mental side and accepting the situation. Only time will tell how this is going to end up and will I get over this Letrozol disaster or not. Plus i still have pfs even though i would somehow get better from letro.

#14

I visited the first doctor here in Finland today who knew whats going on. Post finasteride syndrom, he said in his second sentence. He also said that he sees these patients weekly. Which is really worrying piece of information.

We went trough my situation and the lab test. He suggested me to go on TRT because of the low testo measurents and because that is an actual finding which should be corrected. And also because I have all the secondary hypogonadism symphtons. Testos were measured 4-5 times since 2/2018. Total testo has been average 12.6 (range 10-29) and free bioavailable testo has been average 185 (range 220-500).

What do you think guys that I should do? There are so many stories that TRT didnt make any good or was just temporary help. Were all of these stories with lowered testo readings or was there also testos in the lower side on the rande but in the range?

Any help guys? Doc is suggesting the TRT trial for example 3 months.

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#15

I can’t advise on the TRT but in your position I’d ask the doctor what good it’s done his other PFS patients.

I’d also ask if he could offer them your contact details so that you might be able to meet and discuss things and support each other.

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#16

Which doc did you see, I’m from finland too

#17

PM send to you. Maybe we can continue discussing the opportunities here in Finland.

#18

The sensing of the gland reversed a little. It has sensing now but it doesnt feel good att all. The worst sympthon is the overall sensing of the penis skin. It was much better before Letrozol destroied it. Fucking doc.
Now the penile skin does have sensing but no sexual sensitivity which is so horrible feeling that i cannot describe it. Can have erections and also last week some ejaculations but the touching of the penis just doesnt feel anything. And I can feel it ALL the time that it doesnt feel anything. There is no single second because of that, that this shit would not be in my mind. This makes me loosing my mind.
The numbness somehow has transformed to this overall skin insensitivity. Before letro it was better and i could somehow enjoy masturbation/stimulation/sex. The skin feels dead. When the testo rised with letro, i had really hard nightime erections. Few times it was like burning feeling. I think that was the time when something destroied. Nerves in the penile skin or was that the AR receptors in the penile skin that got destroied once and dor all?
This feels like it is not reversible anymore.
What do you guys think, should there still be hope or should i just give up?
This sympthon has just totally destroied my living.

And after letro i havent been to work, i have been sick and dont know if i can go back to work anymore. Some sympthons like the gut/digestion issue has gotten a little better. And also appetite is better. And the nausea which i have had since 2/2018 is now better, dont know why…

For the sleeping issue i have taken organic aswaganhda (like tea form) at around 8-9pm, then eat porridge around 9-10pm and last thing before going to bed taken L-Tryptophan and magnesium +B6. So with that recipe, sleep have been better. Not good but better.

Days have been really hard lately. I have a 3 year old daughter who is the sweetest person in the world. And now she has lost his father and the possibility to have enjoyable life with me. And she has to pay for all this bullshit. Its just so wrong. So wrong. That little girl has just totally lost her dad. These supposed to be the happiest days of our life, and now they have transformed to the ultimate horror of our lives. Also other members of the family are going trough this nighmare evert day.
I have lost my daughter and the time that i should be spending with her. And I dont know how long i’ll even live, how long i can be able to tolerate this. This is no life. This is pure misery day after day after day…
In my opinion, somebody really should pay for releasing this drug. Heavily. Not money.

Going back to symphtons, i think after letro-disaster, also my overall skin sensitivity dropped down a little. Fucking awesome. So did the letro destroy my estrogen receptor also? Or how can i know is my estrogen rec also fucked? Or what is the cause? Libido also dead still so thats going to be permanent also? What a mess this is.
Feels just so unbelievable.

But despite all this post,
I wish all you guys the best. I really hope you get better and there will be new cures discovered. In my case it doesnt look good because of the letro.

(100usd donation also made to the foundation)

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#19

:+1: re the donation!

I’m so sorry to hear how you are suffering and how that is further compacted by not feeling that you can properly be a father to your daughter whilst you are unwell. You may feel that she has lost her dad but you’re still here, loving her dearly. I’m sure that other members who are fathers will be able to relate. Some things sound like they are working and getting better and that should give you hope. Although you feel that penile skin has been destroyed, you don’t know that for certain. It can be hard to see hope sometimes when there are storm clouds all around, but if we take a step back we can hope to see that there are subtle shifts that move us in the right direction. Hang in there!

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#20

Thanks for your reply Scotsman, I really appreciate your supportive thoughts/style in this thread and also in general in this forum.

Have started to notice that also my skin is more insensivite overall. I think it is after Letrozol wrecked me. Everything is starting to looks like im sliding to the same direction as username douglasmich🙁 Freeking scared.
Any good ideas what should I do?

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